I fell into writing about health shortly after grad school, where I realized I didn't want to work in a lab for the rest of my life! My areas of interest are the brain and behavior, as well as what influences the decisions we make about our health, and how the media helps and hinders people's understanding of health issues. As an undergraduate, I studied English Literature and Biopsychology at Vassar College, and got my PhD in Biopsychology and Behavioral Neuroscience at CUNY's Graduate Center in New York City, where I grew up and live now. My day job is as Associate Editor with the health website, TheDoctorWillSeeYouNow.com. My work has appeared in several other publications, including TheAtlantic.com and YogaGlo.com, and I'm particularly excited to join the Forbes health team. Email me at alicegwalton [at] gmail [dot] com .

Inside The Mind Of Frontotemporal Degeneration: A Patient's Story

The first of the FTD patients talks about what it’s like to “live a life that’s slowly slipping away.” More patients will share their stories in the coming weeks.

A self-professed pain in the butt, Howard Glick, 54, has shaken up the FTD community, mainly for the purposes of bringing patients together and bringing attention to this little known brain disease. Last year, he launched a blog to chronicle his own road with FTD, and he is now, in concert with the Association for Frontotemporal Degeneration (AFTD) and producer Joe Becker, making of a documentary titled, appropriately, “Howard’s Brain.” He also heads an online patient support group for “FTD’ers,” the first of its kind. Caregivers are not allowed to join.

When asked to describe what it’s like to be “inside” a brain with FTD, Howard speaks candidly. “I feel like I’m psychologically intact,” he starts, “but I know I’m not normal.” He explains that his behavioral symptoms – mainly what’s known as “disinhibition, or the lack of that “filter” that keeps most of us in check – are one of the hardest parts to contend with. Being “aware that I’m unaware,” he says, is the crux of the disease. “My filter is going,” he adds, which is both a blessing and a curse.

“If I’m with people, I can control it more. But if I’m by myself I’ll say anything. Like, walking down the street, if I run into a 7-foot guy covered in tattoos, fresh out of prison, I don’t care – I’ll ask him why the hell he has a cancer stick hanging out of his mouth.” Howard says this disinhibited behavior has gotten him into some sticky situations. Luckily, as a former salesman, he’s also gifted talker, and is generally able get himself out.

“Sometimes I feel that my self-control is slipping. You can see why people are institutionalized. It’s very hard,” he says. “I’m lucky I live in New York City, because in Iowa, I’d probably be in a facility by now.”

These scenarios can make for fun times for him and his close friends. But the flipside is a related symptom, apathy, which makes maintaining personal relationships harder for Howard as time goes by. “In a lot of social situations, I just don’t care. I do care, but I don’t. It’s weird. It usually doesn’t occur to me to give a shit how everyone else is. I can talk nonstop about myself for hours. So I have to push myself always to ask how other people are doing. I work hard to be interested and to stay involved, because I want to stay in the human race as long as possible.”

Howard talks for a long time about how his relationships with those around him have changed over the years. “In some intense situations, I’m almost emotionless. But it’s still there. It often comes out later. Even when I don’t care, I do care. It’s still in me.” At several points in the conversation Howard’s eyes well up with tears – an interesting twist for a person whose emotional capacities are deteriorating.

Besides the social issues the disease presents, the more technical aspects are at least at frustrating, and certainly scarier. Everyday decisions are getting harder for Howard, and some have become impossible. Absorbing the content of complex emails, configuring his scanner, and balancing a checkbook have become chores that his mind just can’t accomplish. The problem is that, being single, he doesn’t have the built-in caregiver that a spouse provides, which is a major handicap with a brain disease. His power of attorney lives across the country and he doesn’t like to call on close friends for help in every decision.

The other major issue looming large in Howard’s mind is long term care. When Howard can no longer live by himself (a reality he hopes won’t happen for another 20 years), his options are not great: A state institution may be the only one. His long term disability insurance company terminated his benefits during his years of misdiagnosis, and his lawyer is working to have them reinstated. Howard ruminates a lot about the future – and while rumination is a symptom of the disease, this worry is quite real. At some point, Howard will move further into the limbo he’s already entered: He’ll have too many cognitive issues to live by himself but he won’t be ready for “institution life.” This predicament is one faced by a great many Americans who are single and sick.

Despite the challenges that he has in everyday life and his serious fears about the future, Howard stays upbeat, and says that FTD has in no way for him been the end of life. After the devastation, if one can come to grips with the situation, there’s a lot of hope.

“This disease sucks. FTD strikes people in their prime, when they have kids, careers, just when they’re entering the best of life. You’re devastated. You don’t understand what’s happening to you. My kids grew up thinking I was a lunatic. You get financially crippled. Your life, self-esteem, is at stake. Then they tell you have FTD and you’re gonna die soon. How do you recover from that? It’s not easy, but there’s life after FTD.”

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Howard Glick IS the rockstar of FTD! Formerly a social work faculty at a major university, I recently received the diagnosis of FTD. I just turned 56 years old. Your Forbes article and the recent NY Times piece are excellent – with your article highlighting what is typically absent from information about FTD. . . . the voices of those of us with FTD. Thank you for letting us hear the clear voice of someone intimately experiencing one of the most devastating illnesses a person in mid-life can experience. Many of us still have our voice and our insight; and it is rarely heard above the din of the constant focus on the caregiver. Thank you Ms. Walton.

Thanks for your comment, Vic. I’m sorry for your diagnosis, but as Howard shows, there can be life after. I hope you’re a member of his group! I’ve talked to a number of patients so far, who have been so interesting and insightful; I look forward to posting their stories. All my best to you.

Thank you so much for covering this disease. My mother has FTD and it is disheartening for everyone around to go through it. I think Howard’s perspective might be just what my mom needs to hear. I’m looking forward to the next FTD story in your series.

Dear Ms. Walton, I have a different perspective on FTD and I hope with your future articles that you portray the other side, the majority side of what FTD patients go through and what caregivers go through. Please don’t get me wrong I commend Howard and his efforts and a lot can be learned from Howard and others like Howard who are high functioning FTD patients, but Howard is not the norm in the FTD world. My husband and like many others suffered for 6 years, lost his ability to talk early on, because of his lack of judgment he was unsafe to himself and his family, he became bedridden for two years prior to his death, just to name a few of what FTD sufferers go through. And for the record my husband was not on any medications, so that was not to blame. I do not believe for one minute that he choose to not live and just die, what was happening in his brain did not allow him to choose to live life. Please take some time, do some research and report all aspects of Frontotemporal Dementia. Thank you Ms. Walton for reporting on FTD, I appreciate all of your efforts.

Thank you for writing, Ms. Brader; I’m sorry for your husband’s struggle and for your loss. I do understand that Howard Glick and others like him may not be the norm, and that many FTD patients lose certain brain functions much more quickly and severely. I was simply trying to portray the other side of FTD: Many articles, the Sunday New York Times piece included, portray only stories that are quite tragic and upsetting — especially for the patients who are newly diagnosed. In our interview, Howard (and some of the other patients I’ve talked to) said that at the time of his diagnosis (which came an excruciating 6 years after symptom onset), he was encouraged to make end-of-life plans, and was virtually set free, without much guidance from the medical community. The internet was his main source of FTD information, and the articles and statistics from websites were, understandably, terrifying to him.

My intent in the piece was not to be Pollyannaish about the disease — because I know it is a terrible one — but just to show that it is truly a spectrum. And single case studies, especially when they are told through the caregivers eyes only, just don’t represent that effectively. I hope this makes sense, and again, thank you for writing. All my best.

Alice, thanks for your story and while my heart goes out to Howard Glick, I feel he is the extreme exception and not the norm. And I notice he does not mention a spouse (or children that still require care of their own). That would be the norm!

Mr Beckers comments that “Howard is the patient and he is still talking” is nothing short of his ignorance of the disease and its symptoms! And caregivers are not “watching a war” … we are the allies and we have been wounded also. PERHAPS YOU DID NOT KNOW THAT ONE OF THE SYMPTOMS OF FTD IS APATHY! Howard speaks just like a typical FTD patient … he has no empathy for what caregivers or researchers “give”.

I can assure you than behind every tough “f- -cking” (his words) FTD blogger that is not going to “lay down and die” is a faithful caregiver. And sitting at Starbucks for entire days on end is nothing but the exception. It pains me that this article would entice it readers to believe such nonsense, and that you would validate it as such. I wonder how many of Dr Boeves patients (by the time of diagnosis) would be able to spend entire days at Starbacks by themselves blogging.

Children that huddle alone in their homes, missing their father, trying to remember what he was to them before FTD and praying that he does not do anything awful today. Praying that they can have a friend over to visit this weekend and that their father will not expose himself in front of them. Or getting to the point that they just stop having friends over at all. Wives terrified of knowing that the savings account for tuition is not being used for tuition, but rather is being used for doctors and lawyers and repairing things that her husband keeps breaking. Angry fathers firing off unimaginable horrible comments to to the wife that he adored just a few short years before because he has just had a social worker take away his drivers license. Children afraid to answer the door because yesterday their father had put notes in a female classmates school locker and they are afraid the next knock might be the police. Husbands telling everyone that will listen that the head of the neurology department and his wife are conspiring against him….THESE ARE THE NORMS!

Unfortunately your story about Howard Glick excites those who do not understand our hell as a “caregiver”. It provides a false perspective about how a victim of FTD exists, and how “the other victims” (the spouse and children) live in their own hell. To say that FTD is a “spectrum” is so very unfair. To think that there are FTD patients that actually sit at Starbucks for entire days and simply blog and educate themselves about FTD is nothing short of unrealistic nonsense.

The fact that the stories about FTD are primarily generated by and for the caregivers is because the caregivers are undeniably the FTD patient’s advocate. They are the eyes of the disease. We did not leave our husbands when his disease has crushed our families dreams midlife. We chose being there for our children rather than sleep even past exhaustion. We pay for doctors and medicines rather than a night out with friends. We have generated boxes of medical records and we know before the pharmacy does if there are side effects to a change in medication. We read medical reports and articles such as yours rather than a newspaper or a novel. We convince our boss to let us do part of our work at home in the middle of the night so that we can “caregive” for our FTD stricken husband and our “fatherless” children. We have stopped telling relatives and friends about the disease because they do not see these things. We sit in a neurologists office and when asked we recite our spouses most recent symptoms, only to face a four hour ride home with our spouse screaming at us that we lied to the doctor. And then out of loyalty to the husband we love and stand by, we choose not to disclose the perversions and behavior to our friends and family. It was hard enough for us to imagine this could happen to our family; we understand that our friends and relatives find it easier to pretend that “it must not be really all that bad”.

I understand that you intended to present another side to the disease, but that side is so very rare that I am afraid that you have provided a false sense of what life is really like. This story validates that one can live with this disease. Unfortunately, “the family lives with the disease” and the FTD patient lives outside the disease. If I did not live with a husband with FTD and I read your article I would have thought that “it must not be as bad as I have heard it is”. While I am not unsympathetic to other terminal diseases, ….families that live with FTD deal first with grief and then we jump right into hell. We deal with alienation of our families and friends, we deal with criminal issues and shame, we deal with extreme financial hardship, children deal with could almost be referred to as a schizophrenic parent (our courts would never allow children to live in an environment with an untreated schizophrenic and yet with FTD / dementia they are expected to) …and then we move into the next stage when the brain stops other organs from functioning, and we begin a different type of caregiving…and lastly we are forced to bring our spouse to a nursing home that is not equipped for this type of patient.

And yet, we “caregivers” do not look for pity. However, it makes it harder on us when someone writes an article describing this one mans’ “survival”. Yes, a diagnosis is “tragic and upsetting”. For everyone! A diagnosis is not an explanation! or a treatment plan! “without much guidance from the medical community” has not changed much in the last six years! But that is no excuse to profile one man as an example of what one can potentially expect.

Lisa T thank you for your post, you have said all that I wanted to say in my previous post. My heart goes out to you. I guess what I am afraid of is that the community will think this is FTD after reading Howard’s story. But in reality it is not. I have a few questions for Howard, is he in any resarch programs, because I would think that they (meaning research hospitals or schools would love to hear what he has to say. So many of our love ones were denied access into research programs because they were already to far gone ( could not answer questions, could not talk, etc.) I feel for Howard and wish him the best.

Dear Ms. Lisa T. I’m sorry for all your family’s pain and anguish. As I mentioned in my article, my family and young children had their hell to go through. Yes, FTD is a devastating disease for everyone involved. Still that does not entitle you to insinuate things about my life and me. You took quotes out of context and pretend to know my life when you don’t. In one sentence you say, “He is the extreme exception and not the norm, a few lines later you write, “Howard speaks like a typical FTD patient”.

Everyone in FTD world is familiar with all the nightmare stories and you’re not the first person to direct your personal anger at me. You say you don’t look for pity, yet your bitterness and anger is so obvious.

You write that I have no empathy for caregivers. I do care, and work unbelievably hard to show I care. I am in contact with caregivers 7 days a week. I participate in many forums, groups as well as have personal contact through email and phone. I constantly advocate for caregiver and patient alike. I try to bring a measure of hope and sanity to a devastating disease.

You missed the whole purpose of the series. It is a series on FTD patients who are doing everything they can to extend their life with purpose and dignity even though they know it’s slipping away. The series is about human spirit and FTD patients fighting to find a sense of purpose and happiness in life. FTD affects each person differently and there are people that live with it 2 years and those 20 years. There is a hidden population of FTD patients who can communicate and are slowly losing their capabilities. It’s small, but it exists and deserves to have a voice. That’s what this article and series is about.

I’ve had a horrific story of 6+ years misdiagnosis, near death, family issues and now dealing alone with FTD. I will not write out a laundry list to play tit for tat with you or others. Instead of sitting and living a pity party, I spend my time writing to families and participating in online groups and forums. Most of my writing is upbeat and I try to make the most of a disease that turns lives upside down. I’ve dedicated my life to furthering awareness of FTD, educating and helping those both patients and caregivers.

You write like I have a liaise fare life, hanging out at Starbucks all day, sipping coffee and living the life of Riley. It’s anything but that. You can go to my blog and easily read the horror and devastation of this FTD patient. I had a caregiver, now I struggle alone. Every day I force myself to fight on.

I got back on my feet last July by receiving help of many selfless people. I decided to pay that back by starting an FTD blog and helping others. I work extremely hard every moment of every day not only to try and control the symptoms of FTD, but also to be aware of myself. My blog was extremely helpful to caregivers and that led into me being asked to make a documentary, which we’ve filmed about 150 hours of. I also started the first online FTD Patient Support Group, which now has 40 members, all of us working towards having a better life with purpose and happiness while we can. Some of us have even met each other.

A few weeks ago I attended the AFTD conference in Atlanta. Not only did I meet some of the wonderful caregivers that I’ve had contact with, but there were about 12 other patients. We had our own break out session and spent much time in contact with each other. This continues to today.

The writer, Alice Walton, also attended the conference. Alice Walton has been in contact with patients, caregivers, neurologists and AFTD. She has a PhD in biopsychology and neuroscience. Ms. Walton is writing a series on patients, not just me. There were between 15-20 FTD patients in my group who volunteered to be interviewed. This is a side of FTD that hasn’t been shown and won’t detract from what FTD is.

I strongly suggest you seek help and join a support group like the FTD Support Forum or contact AFTD to find a support group near you. I’ve dedicated what time I have left being an FTD advocate to helping both patients and caregivers.

I’m glad you wrote and I hope you follow the series to see another side of FTD. Please feel free to write to me at the email address at the end of the article. Sincerely, Howard Glick

Thank you for writing. I’m very sorry for your husband’s experience, and for all you’ve been through. I think Howard made some excellent points in his response, but I just wanted to stress a couple of things. I think it’s well-documented that FTD is a spectrum, which is supported by the enormously different experiences of the individuals affected (e.g., your husband vs. Howard and some of others profiled here), and, of course, what we know about FTD through brain imaging. So I’m not sure why you say it’s unfair to call FTD a spectrum. Sometimes it’s also referred to as a group of disorders, and in the coming decades we’ll probably understand exactly what each one is, and how they overlap.

Having talked to many patients, I don’t think it’s true that the patient lives outside the disease. Many might, but there is a group who live very much inside it, and are excruciatingly aware of their symptoms, as shown here. I can only imagine what it would be like to be aware of one’s cognitive decline, and be able to compare your present state with the past.

Just to underline the aim of the series — a lot of outlets have only told stories from the caregiver’s point of view, and often of patients who are extremely progressed. While this may be the “norm,” there is another side — or many other sides — and that’s what’s shared here. This is larger than FTD; it’s about people with Alzheimer’s, vascular dementia, CTE, or any other kind of illness, brain or otherwise, who are trying to find happiness and purpose in life, in the face of a devastating diagnosis. I hope this makes sense.

Thank you for taking the time to write about this horrible disease. Thanks to Howard for sharing what many are unable to. I lost my oldest daughter to FTD at age 31. She was diagnosed at age 27 but we believe she started showing symptoms as early as age 22. Her decline was swift and awful like so many. Her brain autopsy showed damage in almost all areas of the brain. Julie’s FTD was caused by a defect on gene 17. She was actually diagnosed with FTDP-17 a tau type FTD. We now know that this defect was passed on by her Father and probably from his Mother. Julie’s Dad is 59 and has been exhibiting symptoms for at least 20 years. He is one of the “functional FTD”. We know there is a 50% chance my son will also carry this gene defect and if so then my sweet little grandsons have that same risk. Because I want to be always the best possible Mom, Grandmom, Caregiver it is so important to learn from Howard and others like him.

To Howard and all the other commentors, I don’t think anyone who has been associated with FTD whether it be the patient, the caregiver, the patient’s family or anyone writing about the disease thinks that FTD is simple.

Howard when I first stumbled upon your blog I was filled with both pain and joy. Pain because I am envious that my husband does not understand or comprehend that he has FTD and joyous because your blog gave me an insight into perhaps what goes on inside his mind and for that I am so grateful. I no longer understand my husband who for 30 years has been my best friend. I love him and know that he loves me but we are not able to communicate like we used to. I am his full time caregiver and although we had not anticipated that this life would be our life, I am determined to make every day as good for him as I can. It is hard because I really can’t tell what he needs but your blog where you said, 1+1=7 made it so much clearer for me. I know things are muddled inside his head and reading your blog gives me maybe a small window into his mind. And while that fills me with pain, it also gives me some hope and some encouragement that my job that I do for him has meaning for him.

With FTD and the lack of knowledge in the medical community I am left to read what I can find online, at AFTD website and Forum. There are no FTD support groups so the best I can do is Alzheimer’s support group and go to caregiver support groups and training. But without having a clue as to what must be going on in his mind I am always left wondering “am I doing a good enough job”, “how can I do more to make his life more meaningful”. Sometimes I feel my husband is blessed because his FTD variant does not allow him to recognize that something is wrong with him so his days and nights I hope are not full of fear and anguish. But on the other hand, he then doesn’t understand why I cart him to doctor appointments and why I “lie” to doctors and always make up bad stories about him.

Thank you Howard and to Alice and Forbes for this article. The more that is written about FTD, from any angle, is better than nothing. One day if this helps the medical community to understand this a little better than it will have been a big help. Because I can’t get inside my husband’s head to see what is going on, Howard’s point of view just may help our children, grandchildren and other family members better understand this horrible disease and better appreciate why the person they have loved is there but also gone.

I know that in some ways, every one of my days has become a living hell as I ponder all that we lost and fear for what the future will bring. But if there is even the slightest glimmer of hope that my husband can experience the world around him with out total chaos and confusion every waking minute than I am willing to live this life as long as needed.

Hi — thank you for your comment. I’m sorry that your road has been so painful, but I’m glad you found Howard’s blog. The medical community is understanding more about the disease/s every day, and luckily FTD has overlaps with Alzheimer’s and other brain diseases, which helps the research along. All my best, Alice

Howard Glick, I have recently been diaganised with FTD. I feel fine, but was wondering what the prognoise’s was? Can you scheade any light on this? Any help would be greatly appriciated. Thank you in advance. My email address is robert.strauss2@gmail.com. Thank you. Bob Strauss

I was given the diagnosis last year of FTD . My daughter sent me your article on her smart phone. I am 65 and just got SS . I live in Raleigh,NC and both my girls live near me. I am single and in a relationship with a man, who sometimes gets mad at me. I can take him and leave ….but he always comes back. My kids and I have fault with each other…..now they just talk among themselves. I don’t drive anymore…but I am happy. I was just at my doctor and he said I am stable. My daughter is taking me to dinner tommrowe

As a caregiver, I find Howard’s story fascinating. I wish him all the best for continued success in his struggle with FTD. I found that with my brother-in-law, making personal connections made a big positive difference in his behavior just as the opposite had a negative effect on him. I’m sure his group is a great psychological and physical benefit for Howard and for all who attend. I have to shout out to all the special people who continue to love and care for their family member with FTD. They are making a difference in that person’s life every day in spite of the many challenges and lack of reward. Writing about it helps ease the stress for me. If anyone cares to find out our story, which is a different take on FTD, but still very relevant: forfranksake.blogspot.com

My mother has FTD, but Progressive Nonfluent Aphasia. She lost her ability to communicate first…. speaking, reading and writing. She is 66 and has had this terrible disease for 6 years now, first noticing a ‘ping” in her brain and not being able to find her words after that. She was diagnosed about a year and a half after. My stepfather looked after her at their home until he died and at that point she was placed in a home, with no one knowing what was wrong with her until I came over. Being the only family member left after several deaths, I had to quit my job and dedicate myself to her until she could transition to a nursing home closer to me and get into a routine and feel at home there. She has been in the extended care unit for a year now, unable to move…. confined to a wheelchair. She has constant fits of crying for apparently no reason. Anything can bring it on. My mother was my best friend in the world and the stress has made me infertile. There are many types of FTD as I have come to understand, and it’s great to hear from someone like Howard and I appreciate the story…. but I’m trying in vain to find out more about what someone like my mother is experiencing. For someone who is on the caregiver side of someone with non functioning FTD, it does feel like I’m the one on the battlefield.